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The Cysterhood

Every time I watch Grey’s Anatomy, I think to myself, “Hospitals aren’t like that.” I’ve seen more hospitals than is reasonable for someone my age, and not once did I see even a hint of delightful banter or sexual tension between the doctors.

Since I’m in a medical mood, I’ll share another of my stories. If you’re squeamish or generally put off by the female reproductive system, steer clear here. And the moral of the story, as a teaser: fellow women! When we were in Health class, they forgot to mention that our reproductive systems may try to mutiny or even kill us. Extreme pain isn’t normal; get it checked out.

Now that we’re past that…

Once upon a time, I was a pretty healthy young woman. Didn’t get sick often. Worked out regularly. The first sign of things to come was a blood clot scare when I first tried to go on birth control pills. Pittsburgh emergency room: check. I remember that visit because we parked out front rather than at the emergency department. When we got to the front desk, the first thing the woman said (before we could say anything) “Are you in labor?” I get that it was a women’s hospital, but way to make a girl freak out. Did I LOOK like I was in labor?!

Anyway. Time passed. And over time, my monthly cramps became pretty intense for a few days. It sucked, but if women took time off work every time we had a cramp we’d never get anywhere. It went from a few days to a whole week each month, but who can take a week off every month? And don’t other women complain of cramps? Surely this was something I couldn’t change. And I came from a family with a proud history of… never going to the doctor.

In 2006, the cramps had multiplied in intensity and duration. Two weeks a month of pain that made me want to double over at times. But I plied myself with Advil and moved on. But then I heard from a coworker who had just been treated for a fibroid cyst. She suggested I see someone about this in case I had something similar, and encouraged me saying they fixed her situation in no time. I wasn’t entirely convinced until that Halloween, when I realized I was planning my days to minimize walking because it hurt to breathe whenever I moved.

Time to see a doctor.

I went to my GP (general practitioner) and got a referral for an ultrasound. I pictured it as the nice, noninvasive kind you see on TV when women are pregnant – so when the technician produced a “wand” that seemed far more like [pardon my French] an elephant dildo than a medical implement, I was nonplussed to say the least. But I lost that train of thought when the technician started showing me my left ovary, and the mass attached to it. The mass dwarfed the ovary, several times its size. She pointed out calcifications that might indicate it was a dermoid cyst. “That’s the biggest one of those I’ve ever seen,” she said. Of course it was. I don’t do things halfway.

She disappeared for a long time and brought in one of the head radiologists to confirm her findings. When the staff wished me “good luck” on my way out instead of a simple “goodbye”, I knew that I was going to need surgery. I didn’t need to wait for my GP to tell me that. And, quite honestly, I spent the afternoon freaking the heck out. My boyfriend at the time kept trying to tell me that I was jumping to conclusions, but I knew what I saw and I knew what was coming. And it terrified me. The thought of someone cutting into me was terrifying.

And then there’s the matter of the dermoid cyst itself. They are rare and they are weird. Essentially, a dermoid cyst is what happens when an egg decides “I don’t need no f’ing sperm” and starts multiplying on its own. Without a sperm, there aren’t enough chromosomes to create an actual person – but there IS enough information to create the building blocks of a person. Dermoid cysts typically contain an assortment of organ tissue, hair – even teeth, in some cases. It’s technically a tumor but usually benign. Knowing that I had this horror-movie tumor full of person parts in my abdomen was, well, horrifying.

That same day, I went to my GP because the ultrasound technicians are technically not allowed to give you a final diagnosis. I had to sit and wait for a bit in the exam room before he came, and the anticipation had the power to slow down time. Eventually, finally, I heard him take the chart out of the bin at the door. Then he started talking to someone else – an intern, the first time I had ever seen one at that office. Then I caught a snippet of their conversation:

Intern: [astonished] “500ccs? That’s the volume of a Coke can! Is that surgical?”
Doctor: “Of COURSE it’s surgical.”

Well. That answered THAT question. But they came in, and we talked, and my doctor explained that I’d need surgery right away. And then, this gem. (I actually like my doctor’s honesty and openness, but I was a tad unstable at the time.)

Doctor: “You know, in med school we had a joke about dermoid cysts. Want to hear it?”
Me: [resigned] “Might as well.”
Doctor: “How do you diagnose a dermoid cyst?”
Me: “An ultrasound?”
Doctor: “You put an ice cube on the woman’s belly and wait for the teeth to chatter.”

Yep. That pretty much speaks for itself. Funny now, not very much in the moment. He couldn’t tell me whether or not it would be scope surgery (minimally invasive) or a full laparotomy (major surgery, 2 days in the hospital). I needed to find a gynecologist who could do the operation in short order. Except that I was still relatively new to the area and didn’t have one.

I spent the next 36 hours desperately seeking a gynecologist. None of the referrals my GP gave me were accepting new patients. “We can see you in March.” …It was November!! What if I were pregnant, do they just expect you to hold onto it for 5 months? In the end, my boss contacted his ex-wife for me and got the name of her doctor, and they took me on the same day.

It was a dark and stormy night when we visited the gynecologist. No, really. The power went out so hard that our refrigerator broke that night. (Amazing timing.) It didn’t take long for the doctor to review my ultrasound findings. “We need to get that thing out of you right away or you’re at risk for going into shock if the blood supply gets cut off.” I asked if it would be scope surgery, and he flatly rejected the idea. The cyst was far too big and solid to remove via an incision, and if it ruptured it would cause many additional problems – especially if it turned out to be a rare malignant teratoma. At one point the doctor asked, “How have you even been walking or functioning?” Good question. Cysts over 4cm are considered risky; mine was over 10cm. We left shortly thereafter with a booking for surgery 36 hours later, and I was one step shy of hyperventilating with anxiety.

Of course, my insurance at the time (United Healthcare, ew) required pre-approval for major surgical procedures. Our HR rep was kind and worked with me every step of the way to expedite the process, which normally takes weeks. Finally, we reached a sympathetic ear. “An ovarian cyst? Oh God, my daughter had one of those and she was in incredible pain! I’ll do everything I can to get this settled.”

Still, 36 hours isn’t a lot of proverbial runway. That Thursday at work (surgery booked for Friday at 8AM), I was waiting for a call from the insurance company to tell me whether or not the surgery was approved. If it was, then I immediately needed to call the hospital to start the pre-op checklist. But no one else at work knew that I was even sick, much less how badly.

As soon as the call came in and my hospital contact was done, I sent a meeting request to my team for 15 minutes later. At the time, I was Producer in charge of a Nintendo DS game with a (great) staff of 15 and the biggest budget my studio had seen. It was a hectic time, and absolutely terrible timing to leave for 4 weeks – but because it was major abdominal surgery, I wouldn’t be able to return to daily life for at least that much time.

When we convened, my team anxiously asked if the game had been cancelled, which was their unanimous conclusion when the request went out. “No, the game’s not cancelled at all.” I paused, trying to figure out what to tell this room of 10 men and 4 women about my reproductive system malfunction. Awkward. I chose vagueness. “But I’m going to be going away on medical leave for 4 weeks, and I wanted to tell you how things will work in my absence.” As it turned out, the team wouldn’t take vagaries for an answer – they pushed until I explained that there was a cyst on my ovary the size of a Volvo that may or may not have teeth. The guys all thought that was pretty cool. Boys.

[And due to that stormy night two days earlier, my last pre-surgery night was spent participating in the replacement of our dead refrigerator. Oh, timing.]

There are a number of substories within my time at that hospital as an inpatient, but I’ll skip those for now. The important part is that I woke up and had NO IDEA what was left or what happened. All I knew was that I had an angry, red 7-inch wound. If the surgery had gone badly, I could have lost a fallopian tube or worse. But I didn’t get to see my doctor until the next day. I badgered the nurses in my morphine-laced panic:

Me: “Do you know what happened in the surgery? What’s in there?”
Nurse: “It went fine, and the Dr. will go into the details tomorrow. You should ask him about the color photos.”

…The WHAT?!

The next day, I got my answer. My doctor proudly informed me that he had managed to save 25% of the mangled left ovary and got the tumor out intact to boot. 1.25 ovaries. At the time, I remember thinking “Why didn’t he just take that ovary out? It’s a troublemaker and I don’t want to have anything to do with it.” But I was assured that dermoid cysts were a freak occurrence, that I was cured and that the next time I saw them I’d be having a baby. First of all, having a baby does NOT sound like a good idea right after your body’s tried to create some sort of mutant. Second of all: foreshadowing alert; see the epilogue.

He also gave me an 8.5 x 11” color printout of my cyst, after removal, next to a ruler indicating it was 4 inches in diameter. Super gross but good to have the proof of what I survived.

Dermoid Cyst
I made this inside of me and somehow walked around with it for years. After the biopsy. it turns out it didn't have teeth after all.

I wish that were the end of the story, but there are two epilogues: firstly, TWO of the other three women on my 15-person game team ended up having the same surgery I did for ovarian cysts within a year. I don’t know what the odds are but they seem pretty infinitesimal. A freak Cysterhood. [That whole project was beleaguered from the start – cancer, car accidents, unexpected babies – I actually commissioned medals for the team commemorating our collective survival.] And one of those women has been valiantly battling endometriosis ever since. There are so many ways for our reproductive systems to go rogue.

Secondly. About 18 months later, I noticed some cramping and went in for an ultrasound in what I assumed was a hypochondriac’s abundance of caution. “It… it looks like there’s a small dermoid mass on your left ovary.”

The gimpy, evil, .25 left ovary is at it again. Dermoids are not contagious nor genetic. The statistical equivalent of getting hit by lightning twice. That dermoid is still there, because its growth slowed when it got to the size of a peanut M&M – too small to justify removal. But I did have to get an exploratory laparoscopy, so I boast a constellation of faint abdominal scars.

I share this because I couldn’t find very much on this sort of thing online during my frantic searches. And lots of women came out of the woodwork after the event sharing their own cyst stories, proving the Cysterhood to be much larger than I’d imagined. Why all the secrecy? If I had known, I could have gone sooner and perhaps saved myself years of pain and suffering.

Ladies of the Cysterhood, you are not alone.

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  1. […] it’s pragmatism. I can’t live without health insurance. (see here and here and here…) I have chronic conditions that require regular care to prevent serious […]

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